Nova Scotia is one of the few places in North America or Western Europe that doesn’t screen newborns for cystic fibrosis.

It’s waiting for a research report and recommendation before expanding its newborn screening program, but provincial officials say that new recommendations are coming in the new year.

But for Tracy and her husband Robert, the recommendations can't come soon enough.

They had two children diagnosed with cystic fibrosis six years ago, and say the stark difference between early intervention and waiting for symptoms to show is heart-wrenching.

Their oldest child, Carrington, got sick at three and a half and was diagnosed. After that, they got their 18-month-old son Matthew tested and he has enjoyed a much better quality of life. “From one end of the spectrum right to the other,” Tracy Pentecost said. Carrington wasn’t so fortunate and passed away on Aug. 29, 2011. Like many cystic fibrosis (CF) patients who are diagnosed too late, Carrington had a thick mucous build-up in her lungs that made it difficult to breathe and suffered irreversible damage to her lungs.

“We were pretty lucky to have her until she was nine,” Pentecost said, fighting back tears. “It was a shame because she would still be here," Pentecost said she remembers asking her doctor why Nova Scotia does not screen newborns for cystic fibrosis. She said she was told that there was too much of a chance for a false positive, but that’s something parents could deal with. “I would so much rather know and then find out that my child doesn’t have CF, than not know, and not have that baby treated.”

When Carrington was diagnosed, she had 40 per cent lung capacity. By comparison, Matthew has 95 per cent and is an active boy. “Matthew is in hockey and he doesn’t stop,” Tracy Pentecost said. “He’ll come home from school and he’ll throw the book bag in his room and he’s gone to play outside with his friends. Carrington couldn’t do any of that.”

Nova Scotia is one of five Canadian provinces that does not screen newborns for CF. All provinces west of Quebec test for it, as do all 50 U.S. states, New Zealand, Australia and most of western Europe. She said she hopes Nova Scotia moves in step with these other places. “Look at it as if they were your children,” she said to the people making the decision. “Put yourself in the situation of the parent that has a sick child.”

Nova Scotia Health and Wellness Minister Dave Wilson said the province is committed to reviewing the policy and expects a report and recommendation in January.

“There is nothing more important to new parents than the health and well being of their babies,” Wilson said. “If there is a better way to help screen for future health concerns like cystic fibrosis, then we want to look at it and to help reassure families that the province and the screening program that we have is adequate.”

Nova Scotia screens newborns for 13 conditions, but the Izaak Walton Killam Children’s Hospital and the Nova Scotia reproductive care program are looking at expanding the program. Wilson said his government’s decision will not be affected by cost.

“That is not an issue for us,” Wilson said. Ken Chan, the vice-president for advocacy, research and health care for Cystic Fibrosis Canada, said even if that were the case, “you can’t put a dollar value on human life.”

In addition, he said, a cost-benefit analysis would determine that screening newborns for CF would save the government money. “Early diagnosis and early treatment reduces hospitalization,” Chan said. Bob Fortier is the president of the Cape Breton Chapter of Cystic Fibrosis Canada. He estimates that about 20 to 25 people in Cape Breton have CF.

He says he marvels at the dedication of parents of kids with CF because it’s a lot of work for them to just take care of their children. “I marvel at how they can find time to sit in a mall for four hours to sell tickets or to come to meetings, but they’re dedicated,” Fortier said.

Some of them wrote letters to the province this fall, urging the province to expand the program. Fortier thinks that the advocacy will make a difference. "I don’t think they’re going to sit on this one,” he said of the anticipated report. “I think they’re going to act on it as soon as they get that report.”

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jinu

April 22, 2013 - 03:30

I Agree Tracy, You have my support all the way! Things need to Change, and they need to be changed Now! Thinking of you all & Praying this Change comes into effect ASAP! {Hugs} Rest In Peace Beautiful Girl.

It's time we jump on board with the other 5 provinces in Canada and start screening our infants for CF. We owe it to our children to make this happen, early detection means early treatment. Time for change. Lets make Carrington's question become a reality. May you RIP sweet Carrington.

Carrington could still be here today if she had been tested at birth. Early testing could change the future for so many children and their families.
I agree Tracy, I think that the testing should be done ASAP to a child.
Rest In Peace Baby Girl.

I agree Tracy, I think that the testing should be done ASAP to a child !! We all seen what early testing can do to help them .. were all praying for this change to come really soon. Rest In Peace Baby Girl

I Agree Tracy, You have my support all the way! Things need to Change, and they need to be changed Now! Thinking of you all & Praying this Change comes into effect ASAP! {Hugs} Rest In Peace Beautiful Girl ♥

I truly believe early cf testing is so important. Their should be no questions to be answered when it comes to the life of a child. I have seen first hand the difference in matthew and his sister. Carrington could still be here today if she had been tested at birth. Early testing could change the future for so many children and their families.

I have been writing to Minister’s and other government officials for over a year and each time I get the same answer which is, they are looking into to this matter. Carrington and Matthew are proof of what can happen when testing is performed early. Every child regardless of where they are born in this country should be given the same start in life.
When Carrington was six she asked me a question “Why don’t doctors test babies for CF, because if they did I wouldn’t be this sick I would be like my brother’’. She knew herself, that if she had of been tested earlier she wouldn’t have been so sick. Why is it taking the Nova Scotia Government so long to make a decision that a six year old child has already answered?
There is no doubt in my mind that my niece would still be here today if she was tested at birth before the damage was done. I ask that you please all support this cause and demand that the Nova Scotia Government joins the other provinces in Canada and test our children for Cystic Fibrosis.
Together we can save lives.